Wednesday, December 21, 2005

Head and Neck clinic results - Merry Xmas

I hope you are well and as you see I am winding my postings down.

The blog served as a useful tool when I was ill and hopefully kept you informed and smiling in what was the crappest period of my life.

I need closure, however it does not come easily. Yesterday I felt a pain in swallowing, in my right neck area, felt and thought I could a lump! You can imagine the pain and horror that went through my mind. It was lower than the lymph gland and accompanied a sore throat. I was lucky as only had one day to wait to see a Dr at the specialist clinic.

Unlike the other lumps it is painful and sore. The head and neck clinic of 10 people has been scaled down to one young Dr obviously thinking I am getting better. He examined the lump, my mouth, throat and usual suspects before saying it as a salaviary gland and not to panic.

I did and will :)

Anything else was fine and I can enjoy christmas, is that an oxymoron or just a contradiction in terms :)

Happy Christmas thanks for all your love and support.


Monday, November 14, 2005

Mouth Cancer awareness week

As you know I have the tendancy to be competitive, in fact I have said before buying a tube ticket is a sport for me and queing for a bus resembles the opening of the sale doors at Harrods.

This week is no difference. I have managed to get myself on Sky news radio, Gemini Radio, Devon's local independent local radio station and the Exeter, Express and Ech, no not through the court circular but speaking of my experiences of mouth cancer. In essence I see the campaign as important and if I can help one person nmot going through the shit I have been through then I have suceeded. It means closure for me.

Oh and of course I beat Mr T Griffin to local fame through more press coverage and my ex partner who on recent weeks has appeared on Home Truths and in the Guardian!


Wednesday, November 02, 2005

Mouth Cancer Foundation Press Release

Mouth Cancer Awareness Week – November 13-19

CASE STUDY – Nigel Gooding - Exeter


Release: Immediate

Local man fighting back from deadly disease: “My friend saved my life!”

Mouth cancer kills one person every five hours in the UK. In addition, one in two sufferers dies as a result of the condition. However, with early detection survival chances increase significantly.

It was in March this year that 41-year-old Nigel Gooding first became aware of a small lump on his neck. He had leant his hand against it during a trip to Cheltenham Races and booked a doctors appointment when he got home.

Due to his flu like symptoms, it was originally thought that Nigel had mumps but with the lump on his neck still there two weeks later, his friend Nicola began to worry.

Nigel commented: “I am a single man who lives alone, but with two children who live with their Mum. I was not going to go to the doctors again to get the lump checked, but my friend Nicola begged me to go. I am so indebted to her. I have read statistics since that single men have less chance of survival with cancer because there are no partners to nag - so thank you Nicola!”

On Nigel’s second visit, the doctor expressed concern that the lump was in the wrong place for mumps and sent him straight to hospital.

There followed six weeks of tests; including two needle biopsies of the lump, a CT scan, a head x-ray, MRI scan and an endoscope of his throat.

In May, Nigel was admitted to hospital with a small tumour on his left tonsil. Diagnosed with cancer, he underwent a radical neck dissection to remove the lump, with intensive radiotherapy and chemotherapy sessions soon following.

He continued: “The specialists had no idea why I developed mouth cancer. I have never smoked. In addition, I spent much of my childhood and adult life keeping fit and running half marathons, as a reaction to my father’s heart disease being caused by smoking.

“Like most, I do enjoy a glass of wine and, like most, I have overindulged on occasion – but I am not a heavy drinker. I was told by the specialist that 25 percent of people who develop mouth cancer have no link to the major risk factors.”

Nigel was speaking the run up to Mouth Cancer Awareness Week (November 13-19).

The main risk factors of mouth cancer are smoking and drinking to excess, with people who do both being up to 30 times more likely to develop the condition. However, this year’s campaign is using the tagline ‘It Could Be You’ to inform people that the condition can strike anyone at any time.

Men are twice as likely to develop mouth cancer as women, although the ratio of women to men suffering with the condition has grown by a third in the last 10 years.

Nigel only discovered the condition a few months ago, but it has already had a very major effect on his life.

He said: “During my radiotherapy and chemotherapy I could not eat. I went eight days without eating, because my mouth and throat was burnt internally and chemo made me feel sick. I had to be fed through a tube via my nose and even drinking water caused tremendous pain.

“The first four weeks after treatment my quality of life was one out of ten – now it is closer to eight of ten, and I have even managed to get back to the gym!

“Of course when you have cancer you go through the normal questions – why me? How me? Have they got it wrong? Am I going to die? It was tough on my family too and had a big effect on my children.

“I am on the road to recovery now though. I still face the possibility that cancer could end me life at 41 but I have more purpose know. I value different things to what I did before cancer.”

Dr Carter, chief executive of the British Dental Health Foundation, who co-ordinate the awareness campaign, commented: “Early detection is the key to surviving mouth cancer, so we need to be examining our own mouths regularly as well as maintaining regular visits to the dentist.

“Look out for any unusual lumps or red or white patches in the mouth and if you have an ulcer that hasn’t healed after three weeks, get it checked by your dentist or doctor immediately.

“Self examination is now the norm for breast cancer and testicular cancer – it needs to be the same for mouth cancer.”

Members of the public can show their support for increasing mouth cancer awareness by purchasing the Campaign Blue Ribbon pin badge. The ribbon is available for only £1 including postage. Send the donation with a SAE to British Dental Health Foundation, 2 East Union Street, Rugby, CV22 6AJ. The money raised from the sale of ribbons will be used to expand the Foundation’s work on improving awareness of mouth cancer, which could save lives.

Mouth Cancer Awareness Week is coordinated by the British Dental Health Foundation, supported by Denplan, and backed by a wide range of leading national health organisations. These include Action on Smoking and Health (ASH), British Dental Association, British Association of Head and Neck Oncologists, British Association of Oral and Maxillofacial Surgeons, Cancer Research UK, the health departments of the four UK countries, GKT, Mouth Cancer Foundation, Pharmacy Health Link, QUIT and Scope.


Tuesday, November 01, 2005

Best mate and pheasant RIP

I really hope the pheasant that shattered my windscreen today enroute to watch Horse Racing at Exeter died quickly, the thing nearly made me late for races, thank goodness it was only 4 miles from my house to the track. It was even more ironic that the bird died less than half a mile from my house.

I made the decision to crack on the racecourse to witness the return of Best Mate in the Haldon Gold Cup. The rest is history one minute he is being pulled up, the next minute he has veered in front the last fence and collasped. We all stood and saw the screens be erected. Here was a national treasure half a mile away underneath the screens. The jockey and Hen Knight walking away, his jolly owner walking away in tears and all of us stuck to our binoculars as the horse ambulance or hearse pulled up neck to the screens. The ambulance pulled away and you could not see a horse walk in. The king was dead. The presentation took place then Vickki Robinson the normally storic friend of mine announced to the crowd that the king had died she was in tears, as were people around me and yes I wiped a tear away from my eyes.

For many it was their first site of a horse that have given millions so much fun through his horse racing and charity work. I cannot explain the air at Haldon, for just a moment life did not seem real, it felt surreal, racing was unimportant. He had died in front of his worshippers rather than an empty paddock. Tonight he will be buried at the last fence, may he rest in peace, unlike the that BLOODY pheasant!

Tuesday, October 25, 2005

Day 69 - Head and Neck clinic results

Well today is rather strange, it is 6 years to the day that my father died but here I am celebrating being given the all clear from Head and Neck clinic. I have to return in 2 months time, which means it is my second month cancer free.

I left the room wanting to cry, full of pent up emotions and nervous energy I walked out and drifted around the hospital corridor not in celebratory way but a sense of huge relief sweeping over me.

I tend to put cancer to the back of my mind now and try and live for the moment, it is something which makes me look over my shoulder everyday but not for too long.

Just as I shed a tear for my dear dad this morning, they get shorter every year as time makes a great healer.

Keep attacking! N

Monday, October 24, 2005

Days 61 - 68 - Head and Neck clinics

Today is my second head and neck clinic. The last week has flown by, I been to London, looked after the children and returned to gym all with no ill effects. The mouth ulcers are going and quality of life has improved no end in the last 7 days.

I feel I have my old energy back and after having my medical assessment before joining the local gym, my blood pressure was on the slightly above average not suprising when you consider the summer I have had. Most of which was spent on my back either in my bed or a hospital one.

I have not worried about my visit today I suppose more to do with being busy than over confidence. I remember saying after I had done a huge walk in May before I knew I had cancer saying "there cannot be anything wrong with me if I can do this walk" I never ill before and its the same now. Of course my shoulder hurts, of course my mouth still reminds me of the RT and chemo however my general health feels quite good. I am keeping my fingers crossed but will find out today.

N x

Sunday, October 16, 2005

Day 55 - Day 60 - Life goes on- some thank yous

Well it is nearly a week since I posted here. Why the delay, well I suppose it is about having something witty, fun, or morose about my own condition to say.

I had another week of work and spent time in London. I witnessed Beaver Cars in action on my long train journey and managed to have a row with queue jumpers at the Odeon trying to get into see Wallace and Gromitt at the Odeon. Having the energy to challenge is a sure sign I am getting better!

I am very tired each evening, it is a different sort of tired my body aches and the yawns cause me problems. Yawning can be quite dangerous, you see I have no muscle structure on the left side of my neck so a yawn tears at operation lines and tends to cause the left hand side to freeze imagine doing driving. I have your whole head goes into spasm and you cannot move it looks hilarious to onlookers but its bloody painful and a tad dangerous at 70 mph, ok 55 mph in the camper! I lied.

I have however never taken cocaine for the record! Just in case I get called on the stand for election in teh next few months.

I can deal with the tiredness = sleep however there has been a marked change in the last week. Since RT finished I have been dribbling at night getting away without having a dry mouth, however in the last week there is no saliva left in my mouth. I tend to awake about 4am with a dry mouth it has no fluid in it at all and your throat, tounge and mouth feel like they have seized up like an engine with oil. I combat it with water, oral saliva replacement gel, but these tend to only work about for about 3 hours so my sleep is broken and when I wake up it is very uncomfortable as my lips are coated with a white film and prising my lips apart is quite difficult. Throw in my sore shoulder from the operation and the first 30 mins of waking up are pretty poor.

Things have improved on the ulcer front I am checking it everyday it seems to subsiding and the only problem I tend to get with it is during those dry mouth nights where it is exposed to air and boy does it remind me it is still there.

So things are generally good at the moment. I have lots of thanks to say to people and I am not sure how to say them and show I mean them. So over the next few weeks I will cut down the postings to three a week, unless anything dramatic happens - like my next Joint Head & Neck Clinic on the 24th Oct! I will however be saying thank you to lots of people for being my friend, loyal and there for me.

Tuesday, October 11, 2005

Day 52/53/54 Cornwall

I cried when I left Cornwall, not because it was pouring with rain but because it holds so many happy childhood memories for me when we were a family and I was protected. It was West Cornwall I fell in love with many years ago, playing with gay abandon in the sand dunes and rock pools and hoping my children will have the same experiences.

I cried because I did not want it to be the last time I ever saw West Cornwall. I get like that fear of the unknown always in the back of your mind a slight doubt will the cancer return. I am taking the children at the end of October back, so why the tears? Who knows John Peel use to cry after Little House on the prairie and Sheila use to comfort him, so if its good enough for Lord Peel its good enough for me.

The break was well deserved, no driving and very relaxed.

I struggled at meal times mainly due to "new English menus" which does away with gravy or sauces with meals and leaves a dry dish to attempt to squeeze down with lashings of water or in my case beer. Ok it was not lashings but 2 pints one night, which took me three hours to drink whey hey!

They are trying to extend the Tate gallery in St Ives into the car park, destroy sea views of local residents if they cannot extend they will have to close, so the Tate story goes. After paying £5.50 to view 6 pictures of local St Ives artists, and 2 floors of a radical Berlin artist whose name forgets me, but 10 years ago in less politically correct times I would of called Helga I struggle to see what all the fuss is about. The main reason for extending is so that they can cater for more people in the overpriced cafe, which took 30 minutues to serve up a fairly bog standard cafe mocha, all for £2.50. I have often wondered how the beast of Porthemoor Beach was able to get planning permission in the first place considering it has all the beauty of a hermit crab without its shell!

One of the exhibitions was a 16mm film of a working revolving cafe in Berlin. The camera was stationary and the cafe revolved around. The pictures were blurred and did not even show you the view from the window!

It is not the first time I have beed perplexed, or ripped off by Tate modern in St Ives, the secret is find something else to do if its raining in West Cornwall!

Friday, October 07, 2005

Day 48/49/50 - Normality

It is Day 51 and this afternoon I am off to Cornwall for a short well earned break.

I survived my first week back in London. I ma working from home today which takes a little of the physical pressure off what has been a tiring week. My main concern was my voice standing up the rigors of full time work. I have been able since Sunday to find enough potions to keep my horrific tounge ulcer at bay to enable me to eat, drink and talk. I must admit with the various cocktails of potions quality of life was pretty poor.

I must admit I did not expect the welcome back I got. People who I had hardly known shaking my hand and hugging me, there was a genuine welcome for me which was very emotional. I felt safe, well looked after, comfortable which in a city such as London is a blessing.

I am off to Zennor later today, still yawning, still tired but I am sure a couple day in South West Cornwall can only be R&R after all treatment finished 51 days away and still the after effects of chemo and RT linger on.

N x

Monday, October 03, 2005

Day 46 - Beavers!

When starting in business naming your company is always difficult, its easy if you are called Mr Sainsbury or William H Smith but I must admit naming a company has always been a challenge to me. That’s why I admire the owner of the most inappropriately named taxi company in the South West. The award goes to “Beaver cars” of Sherbourne.

Now can you imagine calling Beaver Cars after a good night out at the Sherbourne Conservative Association tombola and charity race night, only to be greeted by the taxi co-ordinator at the other end of the phone saying “Beaver here how can we help” Now you would think you had one glass too much of Mrs Beekeepers home made sherry. Now Dorset is not known for its legends but I suspect there are no wild beavers within 5000 miles of Dorset or in Zoological gardens in the County but for some reason the people who started the company decided to call themselves Beaver! It’s not even a clever marketing tool. If you’re a taxi company call yourself Aardvark Taxis to get yourself the first listing in the Yellow pages, but Beaver cars in a small sleepy Dorset Town I am sure there is some answer to this amazing piece of mystery. I think there is some pun that relates back to the sexual connotations of the alternative word for Beaver, but I have yet to work that one out.

How do I know all these interesting facts I hear you ask. Well it’s looking out the train window en-route to London. I have started back to work today and travelling to London. We are lucky in the West Country there are 2 routes to London from Exeter one can take. The London Paddington route which can be only 2 hours on a fast train or the London Waterloo route, which calls at a mammoth ten stations before depositing me three plus later in South London. I do prefer the latter route it has a more gentile, sedentary and relaxed view of life about it. The route is patronised by a more elderly population than the Paddington route and stops at such hip places such as Yeovil, Sherbourne of course and Andover.

I call it the elderly line, I did not realise how many old people actually lived in East Devon, Dorset and South Somerset. However, regardless of their age they still manage to indulge in the tactic of surrounding themselves with books and papers to bag the table of four and make discouraging noises to prevent young whipper snappers parking myself next to them and upsetting their neatly arranged piles.

The train journey and my fellow occupants reminded me of the Alan Bennett story where he said you cannot imagine Ryan, Brittany or Jordan being in an old peoples home suffering from incontinence and forgetting their name. Only Gladys, Walter or Ethel find themselves in old peoples homes.

I enjoy rail travel my day dreaming of Beaver cars and old people has more to do with my 1st real day back at work, one which fills me with trepidation and joy both at the same time :)

Friday, September 30, 2005

Day 43/44 More remission

Its been a strange week with the events of Monday fresh in my mind, and things definately healing at more rapid rate than previous weeks. Ok my mouth is still playing up and my favourite tounge ulcer is a real bind despite the lotions and potions.

At some stage I must accept life has moved on from those terrible days of the summer and life has a future. I go to London next week with a hint of trepidation, I bought a new suitcase today, not because I wanted to take more clothes but to take all the lotions and potion with me. I must admit I have booked a comfy hotel and now that I am eating as normal as I can under the circumtances and feel I will manage.

Wednesday, September 28, 2005

Day 41/42 - Remission

It is 6 weeks since treatment finished and yesterday someone told me "remember your in remission" Remission is such a vauge word but it means well you maybe cancer free now all your treatment has finished, but we do not know yet.

The fear of the unknown has not stopped me feeling the best I have felt for 7 months. Internally I feel fine, lots of energy eating well, and I suppose wanting to get on with my life. The mouth sores are under control will various potions, hurting ocassionally at the end of the day but the pain is certainly reducing.

I have for the last 2 days noticed a distinct change in my life, very similar to right I can now start planning 3/4 months hence. When you are going through treatment there is no time or will to plan for the future because you have no idea how you may feel or what appointment you have to fufil, now that channel is clear and life has taken a more appropiate form.

Life still amuses me like yesterday the man who called me and told me that he had viewing my website and wanted some advice. I assumed it was cancer advice, but no he said: " I have been viewing your site and can you give me any information on callouses on the knee as I injured my knee walking in the Bulgarian mountains" At first I thought it was a joke, or some sort of code"we have been walking in the Bulgarian mountains" alas he was deadly serious, so I packed him on his way with plenty of rest and daily asprins :)

In reading an article written by John Diamond for the Guardian before he died he summed up my thoughts about the future and life:
This is what it's all about. It's about reading a paper on a Sunday morning while you're thinking about whether you can be arsed to go to the neighbours' New Year's Eve party tonight. It's about getting angry with me for having different opinions from yours or not expressing the ones you have as well as you would have expressed them. It's about the breakfast you've just had and the dinner you're going to have. It's about the random acts of kindness which still, magically, preponderate over acts of incivility or nastiness. It's about rereading Great Expectations and about who's going to win the 3.30 at Haydock Park. It's about being able to watch old episodes of Frasier on satellite TV whenever we want, having the choice of three dozen breakfast cereals and seven brands of virgin olive oil at Sainsbury's. It's about loving and being loved, about doing the right thing, about one day being missed when we're gone.

And that's all it's about. It isn't about heaven and hell or the love of Christ or Allah or Yahveh because even if those things do exist, they don't have to exist for us to get on with it.

It is, above all I suppose, about passing time. And the only thing I know that you don't is that time passes at the same rate and in much the same way whether you're going to live to 48 or 148. Why am I happy? Because I'm alive. And the simple answer to the question 'What the hell is the point of it all' is this is the point of it all. You aren't happy? Yes you are: this, here, now, is what happiness is. Enjoy it.

Monday, September 26, 2005

Day 40 - Joint head and neck clinic

I promised to update you and boy what a relief. The feedback from this afternoon's joint head and clinic was;

I quote the consultants "the Max Fax Consultant said everything looked good mouth and tonsil, and progressing as we would of hoped, the chemo and radiotherapy consultant is happy to way the treatment went" come back in a month, we will arrange a scan for 3 months time.

Good news indeed, you can imagine the sigh of relief I am feeling. The scan is the all important indicator but we will have to wait a few months to make that judgement.


Sunday, September 25, 2005

Day 39 - Tomorrow

I set the alarm early as William and Ellen now have swimming lessons on Sunday mornings, fine in summer but what happens when its cold in Winter?

I spent the day dreaming, tomorrow afternoon I have my 1st joint head and neck clinic, it is the joint clinic where the oncologists, ENT, and Maxfax consultants assess their work and my treatment. I am sure the scope will go down my nose into my throat and a poke around will take place. I am sure there will be prodding, pointing, and saying ahhh a lot and hopefully I can get a third opinion on my mouth ulcers.

It iss early days yet but they will be able to view the tonsil area and look at other signs whether the treatment has been sucessful. There is one word I will not hear tomorrow or perhaps ever, and that is cured. I will of course let you know how it goes :)

It is a known fact that 33% of patients, 1 in 3 have a 2nd cancer within 2 years. That is a massive figure and one that ways on your mind. You just live with the view that I am in the 67 not the 33 out of an hundred and it does not seem so bad.

Saturday, September 24, 2005

Day 38 - Children

I would like to thank my good friend Jan and her two year old daughter, Tallia for the great time we had at her party today. It was the first opportunity I had since May to have both children stay with me overnight, and too be honest I was very scared that I may not be able to cope and take on too much.

The party enabled the children to let off steam in a controlled relaxed enviornment they had great fun and so did I. I was able to relax and scoff all sorts of rubbish which included skips and chocolate biscuits!

I felt very emotional being with my children. Life is terminal event, but I have realised over the past 6 months that my purpose in life is to impart love and affection to my children in the time that I am here, whether that is a few years, ten, twenty or more my purpose in life will be to ensure I give my children maximum love and attention.

Cancer makes you refocus your life and sort priorities out. It gives you time to face yourself and say what do I really want out of this fragile life, a life which still has years to run if I have my way.

Day 33/34/35 Holiday views

I must admit I have always thought of South Wales as an industrial bomb site, mainly through my time there in the 1980's and 1990's however I must admit the Black Mountains and the Brecon Beacons are a wonderful part of the World.

If you add in Hay on Wye, Brecon, and the great woodland drives the countryside the place has a powerful beauty. The hills opps sorry mountains are stunning they are powerful and massive they show the carving out done millions of years ago in all their beauty.

I was not strong enough this year to walk them but next year I will be strong enough to march along the huge plateaus and admire the views.

We were lucky with the weather, warm and indian summer and I was well looked after by battypat and Ron.

I enjoyed the time away it gave me time away to comtemplate lots of things, life, me, my illness and my plight. Life deals us many challenges and I see cancer as just that, the tounge sores are a by product of my treatment, and boy did they make themselves known this week. It was the end of the day when they made their real impact, the pain was unbearable and two nights I reached for the morphine to help me sleep. I must admit the break did me good and left me relaxed and mellow.

I had time to think about me. I am angry, why me, why now, if only I had 10 more years before having to deal with this dreadful illness my children would of been young adults and I do not have live with this fear for the next 10 years. I have read accounts of oral cancer patients who say in 6 to 12 months time you feel that the treatment and cancer was like flu and you look back and think wow I am glad to be alive. I count the days off until that day.

Monday, September 19, 2005

Day 32 - Holiday pains

I am painfully aware that life is a terminal illness. Life is not an infinite span of time we have here but a small snapshot of life, which needs to be lived and seized with both hands. On Sunday afternoon I thought my time had come. One thing I am starkly annoyed at about cancer is that before May I always filled out those medical questionnaires saying, no and nothing in my medical past. I always wanted some sort of choice when I went in 30 plus years time, but not to have to face my own mortality in such a short scale of time.

On Sunday afternoon I was driving my beloved Lizzie to Pandy, a small campsite nestled in the Welsh Black Mountains, close to Abergervenny. After 90 minutes I had reached Bristol. I was aware that I had stomach pains, which I put down to indigestion. I went over the new bridge into Wales and realised that my whole upper body was wracked with pain, my back was tight, and my stomach muscles, what is left of them had gone firm and there was a stabbing pain in my back. I managed to get to Magor services on the M4.

I really thought my time had come, I was alone in the lorry park of a bland M4 car park, my body was shivering and the muscles tightened. I worked out I was not having heart attack or stroke as the pain was restricted to my below my chest, however the stomach cramps increased. I thought is this cancer inside I did not know about. Its normal to think every minor illness is serious now, despite the fact its not connected. I found some morphine and most proberly had too much but within 20 minutes the pain had subsided and it was clear that I would not be ending my short life in an M4 car park. Of all the places to go an M4 service station!

It is clear that the pain was muscular, bent over and driving a van with no powered steering. I had done too much. I should have done the journey over 2 days or 2 stages I pushed my tired weak body to the limits. I arrived relieved to see Ron & Pat and the dogs and the pain melted away.

The night was quiet and relaxed, in fact I needed to rest and you can imagine when I hit the pillow I slept soundly will not ill effects from my traumatic experience. An experience, which I will not be repeating!

Monday 19th September 2005

I slept well there is something very therapeutic about camping, listening to owls as you snooze, the turmoil of the last few weeks sleep forgotten as I slept, only to wake at 6am on my body clock hour. I was able to snooze until 0730 ish when my book took over.

I am reading the girl in the red coat by Roma Ligocka. Roma was jewish, five and lived with her family during the 2nd World War in the Krackow getho. The book is a history of her childhood avoiding detection by the Germans whilst struggling to survive in the most degrading and awful circumstances. The book is one of those you cannot put down once you pick it up. The book makes you realise that perhaps things are not so bad when you consider what children went through during those terrible days. Living in constant fear of death at the hands of the Nazi death machine.

Saturday, September 17, 2005

Day 31 - We are all tired

I eventually got up from bed at 1000 this morning a record for me in recent weeks this after falling asleep at 2300 waking up at 0630 and snoozing until 0800, which is unheard of. It was clear that my trip to London had tired me out, but I was not the only the children came round and it was clear that they were suffering from the first week back at school so as you can imagine it got all tired and emotional!

The camper van is packed and stocked up with food and ready to roll for a few days away in the Welsh borders. It is my first holiday this year I had a holiday booked in Eygpt the week the lump was discovered but a CT scan was booked so I had to cancel.

I have been feeling uncomfortable all day primarly due to the state of my mouth ulcers, avioding talking help and I am able to put my tounge in a comfortable position, but boy it hurts when eating certain foods as you can imagine.

Im off to plan my route the chances of the camper getting there in one piece would be good odds at the bookies.


Friday, September 16, 2005

Day 30 - London calling

Look I know you are going to think I am mad, sad or bad but today I went to London.

I spent most of last night in panic worried about whether I would survive the day. I packed my rucksack with a handful of high energy and calorie medical drinks, bananas I had this thought that I would be stranded in the biggest City in the UK without the ability to find something I could possibly eat.

Mentally I was very nervous, but for the record I catch a local service to Exeter from Starcross then the 2 hour fast train to London. I worked out that if I played things right the maximum walking would be limited to stations and everything could be done by taxi. It all worked well until I got to Exeter meeting an old friend John Milton, John is in his mid 40s never smoked, does not drink and told me he is recovering from a stroke.

I sat there talking about life, inspiration and my sore tongue disappeared into insignificance as we both discussed the life changes we will make as a result of our illnesses.

It was good to back in the Lambeth fold, there was genuine concern in people eyes for me not sympathy but joy to see me back and starting to get back on form. The energy levels were good as I had paced myself and my fear of my brain being on form and up to work was soon put too the test. 2 hours of meetings and I was done, acquitted myself well and was able to get my points across and understood even with my slight lisp.

I returned to Waterloo where there is a through train to Starcross. I scoured the concourse but was unable to find an outlet that served soup. I panicked, would my ensure drink with its 330 calories and a piece of fruit get me through the afternoon? Then I thought sandwich, but my brain said pointless I would not be able to eat the bed it would be too dry. Then it came to me what if I choose a moist filling, egg Mayo, prawn Mayo, tuna Mayo, alas in my haste I ended up with salmon and cucumber on brown! I bought some water and thought I am determined to get this down and use all the water I did. Well I am pleased to say it maybe only a sarnie but it took me 20 minutes to eat the contents, excluding the crusts, but managing the bread. It was the 1st sandwich for 2 months I had eaten but meant that in the outside World I now know I can eat sarnies, preferably wet ones! It was a big step and one I was very proud of.

I returned home at 1800, 11 hours after I left, tired, happy and to be honest pleased I did today, tomorrow will tell whether I have overdone it I hope not.

Thursday, September 15, 2005

Day 29 - It is all relative

Feeling better these days is all relative whilst I amy look better, face less swollen, statue correcting itself, skin healthy, 10 kgs lighter I can assure you that my mouth is bloody uncomfortable.

The one bug that is plauging my recovery is a mouth sore/ulcer it was checked out last week so it is nothing sinister. The are a by product of chemotheraphy and radiotheraphy where the body cannot produce enough saliva to protect the mouth and repair the damage. Natural defences missing the RT has zapped my mouth and it takes time for the damage to repair, mild painkillers help but the sore on my tounge is just on the left jaw bone and affects speech eating and speech.

I can speak, its not painful just uncomfortable at times, a small price to pay I suppose to beating this dreaful disease.

As I get better one question looms in my head, why? I was so aware of health issues relating to heart, keeping fit etc I want to try and pin the reason for the cancer down to one reason. One tangible issue that I can prevent in my life from now on. It is hard because no one knows the reason, there is no reason at present I can only deduce that I sit in the 25% of people who do not smoke and got unlucky. I can cut out the 2 main causes of mouth cancer smoking and excessive drinking, and to be honest my attitude to smoke has always been abhorent, my attitude to drink is moderation, sensible approach and when you are ready your mental attitude will change.

My love of wine has finished, the tatse will leave burns on my throat, it looks like the only alcohol left that will go down nice is smooth beer such as Caffereys or Guniness wow life will be so hard!

Wednesday, September 14, 2005

Day 28 - Reflections

Its day 28, one month ago radiotherapy finished, the induction of pain ended and recovery began.

I remember that last session, I was in hospital feeling pain, finding it difficult to eat, sleep, and drink, talking was hard and my body had been through hell. My mind was confused, would the pain all stop tomorrow because of the therapy was over alas no came the soothing responses of empathtic nurses looking into my eyes. I was attached to a syringe driver, a nasal tube and pain was high until the morphine cut and stopped the pain taking over my weakened body. I looked ill, people could tell then man had cancer and was unwell. My body was frail and the weeks of inactivity had made me weak. I had nasal drip and it made me cough up blood everynight and my mouth was full of mucus and a thick horrid phlegm. My bed clothes would show tale tell signs of large patches of fluid dribble through the night as my mouth dried out.

The skin where I had radiotheraphy burns was purple, and the skin has worn away, I was left with patches of raw skin which dressing would stick too and sympathetic nurses would change my dressings everyday.

One month on, I am sleeping, at least 6/7 hours passes my body each night. I can eat, soft foods only, but back in control of my own destiny in the kitchen. The only pain I face is through talking because of a radiation mouth sore which is going. The tubes and syringe driver are gone as is the morphine. The look in my face is of being content and my eyes no longer have that zombie look. My body is beginning to find a definition and walking is now becoming easier as distance increases. The nasal drip that would create so many problems is gone. I can swallow without bringing drinks back up and the saliva in my mouth is returning and the night dribble has gone. The morphine has gone and so as the anti sickness medication. I feel stronger everyday and able to lift, walk, laugh and yawn without feeling guilty, weak or in pain. The mucus has gone replaced by saliva. I no longer count off days and look forward to return to normality because I know I am on my way already.

My skin has healed and now I have a gentle pink halo when once broken purple skin exisited.

I know I am not fully over the side effects of chemo or radiotherapy but what I do know is that I am 100% better than I was this time last month, and this time next month will 100% further on. The mouth sores which are a side effect give me constant pain and trouble my eating and general well being including talking!

On the 26th September 2005 is my next big day, the joint head and neck clinic where I find out just how well the treatment has gone, its a day I am looking forward to as I know I have made progress and I know the treatment has worked!

Have a great day

Tuesday, September 13, 2005

Day 27 - Ellen and her first day at school

I have just returned from Exminster and taking Ellen my just 4 year old daughter to school for the 1st time.

For those of you who do not have children it may seem a small moment, but to those who who have children it marks a progression in their lives and those of their parents.

Dressed in her school uniform, handing her over to a complete stranger she who you just met 24 hours earlier and ready to grow up at just 4 it makes you emotional.

I wanted to cry, my emotions were running high in the classroom, the torment of 5 months took me back to the moment when I cried when she was born. When I was lying in the hospital bed you would not imagine days like today. Special days, days when you cannot turn back the clock. They are captured forever on film and in my brain.

People are the most important thing in the World, my life has changed.

I love my children, love my job, love my life, and beginning to love me, why has it taken 41 years to realise?

Day 26, 21 days before normaility hits me - More cricket!

Obviusly I was glued to the TV as the England team ground their way to a great Ashes victory. The day was fairly bland as is most of my food.

Eating is a chore, an exercise to ensure I get 2500 calories a day, add in 80 grams of protein and whatever I eat the exercise is purely one of calorie build. My weight is stable and I am working out what I can eat at the moment and what I cannot. Some food tastes normal, then 2 tastes later becomes bland and horrid, I have to forget food that is dry and concentrate on creamy sauces to accompany anything like pasta, but it goes down slowly. Eating is not fun at the moment, but life is, so eat boy, eat and look forward to your next protein full, calorifc fix of blended fun :)

The camper van has gone off to the garage after her MOT she has developed an untimely itch of cutting out every as you are driving along, sort of when she gets hot and bothered, not bad for an old girl by her. If I am honest she has been like it since I have had her but I have been to lazy to sort it, how things have changed. However, a clean bill of health before next weeks trip to Wales will be a tonic and safe in the knowledge that I will not seeking the help of the AA to get me home!

Must dash as its Ellen's first day at school today and of course I want to be there, and at her last day of school as well. I have to pick her up at lunchtime today and have an afternoon of looking after her, what a tonic when you consider what I have been through.

Keep attacking Nigel

Sunday, September 11, 2005

Day 24 - Cricket!

The whole country has gone cricket mad, it does help but I am quite fond of cricket and certainly beats buying a French cottage or a grandfather clock, but this is the last time I am likely to watch a series due to life moving on and lack of SKY TV.

Some weeks ago I told you ago about Horses, big swinging heads ridden by diddy men jockeys and ladies wearing fruit stalls on their heads. Well I was very pleased when BBC lost the rights to channel 4. For years I resented horse racing, Richie Benaud would be summing up the match situation you could tell when his Auzzie strains were just about to disappoint you. You would cringe when you heard him him saying, now with "England needing 7 runs to win and one wicket its over to Goodwood for the 3.15"

If you were lucky you could try and scramble your wireless to long wave, hidden amongst French radio and 1960s radio stations somewhere off the Azores. Once again we are faced with tiny Irishmen, a paddock full of women with fruit and veg stalls on their head and identical snorting horsey beasts looking for their next pray. Of course the very posh commentator trying to distinguish whose in the paddock and which beast is which. You would be lucky to see the race and work out the winner. Then back over to Richie by which time the man of the match presentations are over and Richie is bidding you farewell and we are in for an afternoon of racing or Western films. That is why I was pleased when Channel 4 won the TV rights, but bugger what happens they start to show bloody racing on Saturdays with John McCarrick, England's answer to a human windmill! Least Rupert will not be mixing and matching Cricket and Racing! Well lets hope, pass me the SKY application form.

On a personal front I had both children over yesterday for the 1st time since May. Now when they went I thought it was stressful, but then my good friend Jan asked me was it stressful before? I said stressful and hard work yes, so no different! It was clear however that they have grown up, they fought like cat and mouse but they are six months older than when it all started. Yesterday proved to me that returning closer to them is the right thing to do, the time on this earth is short and I hope am only half way through my life. Cancer gives you a different perspective on life, makes you stronger as a person, makes you more relaxed about little things, but alas makes you stressed about your health. I had to shout at William yesterday which was not a good idea as it hurt my vocal chords, put me back a few days.

My throat is getting better everyday but my vocal chords are very sore, talking for long periods needs lots of water I have managed to stay off the pain killers for the time being.

Eating is becoming fun, thicker creamy soups are going down well, scrambled eggs, milky weetabixs, real proper juices go down well and give me lots of positive vitamins. I need to get the soups to include meat and fish now to build up protein. My return to normality is governed by 4 things: Tiredness, this is being taken care of as my body now seems to be getting what I need and do not seem to be overtired, maybe because the body is not working enough, but we will soon see, Energy levels, If I am able to eat 2500 calories a day then my energy levels are fine. Food intake It is important that I am able to get food external of my house outside of here, and with numerous soft options available. Some people have tackled solid food before me but we have to remember for the last 5 months my mouth has been through a hell of journey. Pain My pain is under control at the moment and no painkillers are required. My mouth is dry and water is a must and constant mouth washing and watering will be required for some months to come.

I have posted that in 22 days I will return to work taking it very easy, no more long hours, no more burning the candle at both ends, more comfortable hotels and earlier nights. The first month working from home 2 days a week will give me a gradual introduction to work, but boy it will be good to get back to some normality. I will review this nearer the date but its good to set a goal.

Right off to Wincanton! Speak soon Nigel x

PS: I may venture out next week to a pub for a bite to eat, just soup or something soft, a big step at this stage returning back to normality!

Saturday, September 10, 2005

Day 23 - Hospital outcomes

Well day 23 after RT was a quiet one mainly through my failed attempts to sleep and my mind wandering. The trouble with things at the moment is my mind is back 100% although my body is not. They seem disjointed and on 2 different shelves.

I had a counselling session to deal with this and it was clear that I have moved on quite a considerable way.

In my body I know I am not as strong as I was and now building up strength through exercise. After my walking, I managed a 15 minute bike ride to Powderham Church and back and boy it was tough but had a huge sense of achievement afterwards. Tomorrow it will be 20 minutes, and today I will walk 1.1 miles or as its raining cycle that on the exercise bike that hides in my shed. Living in a three story hosue has its advantages as well as the stairs give me good step up regimes.

The hospital outcomes for my first check up showed good signs of recovery, shoulder and neck strong, mouth and teeth fine and generally diet ok despiet my reservations at first weight is stable and everyone is happy with what I am eating.

Eating is starting to become less of a chore, I have to put aside time to eat. time to prepare food, it has to be not too lumpy and not too solid but have managed a lasange yesterday all of 500 plus calories and numerous bits of protein. My diet needs protein at the moment so full fat milk, smoothies, ice creams etc are the norm.

I look forward to the day when I can eat a pasty or consume some toast, eat some chips or even bit an apple and get my mouth back into full action. It wil come when the slavia glands start working again so that food can be propelled to the back of my throat into my expectant tummy.

I watch TV and see people eating meals and feel like shouting stop it you are torturing me but I know its only temporary one day soon it will all fall into place and solid food will replace the slushy diet. Do not get me wrong the slushy diet is fine and gives me everything I need, but it takes 3 mins to make and 3 mins to eat quickly.

However, home made soups are really the answer and lunchtime means a homemade carrot soup for me.

Right the cricket is on time to get real, I think the country is cricket mad!

Thursday, September 08, 2005

I am not scared to ask for help here it is!

A lot of people have said if there is anything you want just yell.

Well very soon (Oct/Nov) when I move I wil need help packing, even if you could spare an hour to pack a few boxes for me I would be forever grateful!


Day 22 - Hospial visit

I am delighted to say that my hospital visit today went very well. We discussed the issues around tiredness, fitness, diet, and weight and its all gone well. I now have some sleeping remedy called nytol. It was locked in the cupboard so they must be powerful, the chemist quized me like I was some drugs baron and seeing wether they would mix with the other stuff I have been throwing inside my body.

I wanted to go home and take one but the fear of an early night and waking up at 2am buzzing stopped me. Its the first time in my life I am counting down the hours and awaiting going to bed, I really hope they work as to be honest I have not really slept since finding my lump on the 17th March 2005 imagine the exhaustion :(

Day 20/21

As you get better you want to do more but it is catch 22 more exercise, more tired, more exercise more calories you burn. But getting on the scales this morning I was fairly fixed on 80kgs some where I have been for nearly 2 weeks.

I have read Bob Champions book and of course followed the plight of Lance Armstrong but I am aware of a healthy recovery needs good diet, which I now have, rest and recovery which I have the rest but sleep is still disturbed I suppose it will for a time, and exercise.

I decided yesterday to start walking again, a mile one day, mile and one tenth the next, one two tenths the day after. The whole aim to reduce stress, reduce time spent at home chilling, but putting it towards a good exercise regime. I will listen to my body, but my body is telling me you are getting better, but beware not to overdo.

So today I have walked 1.02 miles in 26 mins, stopping only twice to read things and over 2500 steps. I feel very proud of myself. In essence it is no more than I use to do but the time I get back to work in 25 days time I will hopefully up to 3 miles day. More than I ever use to do in a day to be honest at work.

I am no Lance Armstrong or Bob Champion but both of them showed early return to physical exercise was certainly mentally stimulating and stress relieving enough to help recovery. When I was running the endorphins realised were awesome and made me sleep for hours, one thing I would bag for at the moment is 6 hours sleep.

One of the things I find hard at the moment is the pain of people saying you look well, my voice gets croaky after talking too much later in the day and lethargy does close in, but that's what I want to help me sleep. My body is playing a trick at the mo in bed, when I drift off to sleep, a tickly cough appears, causing mayhem, so when I relaxed my body rebels! Although I find myself more laid back about day to day events than I ever was and clear that I have lost some of the stress before.

I am very excited about 2 new things in my life, one is a new house, madness I hear you cry the other is I am going on holiday! Yes a new house, well it is hard to explain but living in a fantastic rented house with great views is fairly awesome but its not secure as the owners could sell at anytime. The other benefit is that I will be closer to my children and of course in 6 weeks time I will be much better, fitter and sounder in mind with more of my life back. I suppose its about life changes I love my job and have no intention of giving up but the short time I have with my children at weekends its important to make the most of the time I have. In addition its mine a root, the long term survival rates for these things are good and with a settled life style things will be much calmer and cheaper!

I have booked to go away on holiday to Wales the week after next, normal holidays are out of the question because of my diet for a few months but one in the new improved camper are not. I have booked 5 nights away in the camper van and on the same site as my sister for the safety net I am sure I will not need but crucial support just in case. Its my first proper holiday for a while, and one week before my joint head and neck clinic when I will know whether things were a success. I am sure they will be. I have a yearning for my van to me she is normality and I like normality!

Tuesday, September 06, 2005

Day 19 -The tube is out

It is out!

The NG TUbe, commonly known as the nasal gastric tube which ran through my nose into my tummy and sustained me all these weeks whilst my wrecked throat was unable to take food.

For the last 24 hours it was moving like a third being in my tummy, a bout of sickness displaced my tube inside. I was in agony, a quick call to Kevin who advisedd that I could just pull it out or get someone else to do it. now Oprah was here on hand looking like she was the girl for the job, ex farmers daughter however she did not fancy the yank and after a quick phone call to the out of hours surgery at the Hospital saw us enroute to convince a doctor to pull it out.

That was a trial telling them that I want it out, I can and have an Outpaitants on Thursday where the tube was coming out anyway, and no refrence to my notes was necessary all I needed was a yank. I was obliged by an on call Doctor who laid me back and pulled, and boy was it a scarely tingly experience having that pulled out. After all there was nearly a metre of cord and cable, although all plastic still very ticklish.

It left me feeling a little scared and knowing that food will be become more of an issue in the next 7 days as my throat heals. I have to ensure I take in teh protein and vitamins to aid recovery which is not easy when your food intake is limited to 35% of the total food market place. But hey I now have normality in my life no tube and just my life skills to depend on so we will soon see how I progress. I am keeping my fingers crossed but I have come this far and backwards is not an option as I comptemplate more cream laden bannana smoothies!

Nigel x

Monday, September 05, 2005

Day 16/17/18 Reality

I had have a huge dose of reality in the last 48 hours, mainly I am getting better depsite a nagging little cold and secondly that in the next few weeks my life will continued as before if not stronger mentally and wiser.

For the last 24 hours I have had my son stay William, it was the dose of reality I needed to say hey Mister your alive, your not going to die, your going to be back on your feet pretty soon. On a personal level although feeling a little drained and tired,(nights are still a bind as the mouth and throat conspire to fuck each other up and leave me the victim grappling around for some comfort, daytimes are fine.

I had the syringe driver out this morning the last of the morphine and anti sickness, it has been more of an emotional crutch but boy bathtime and showertime will be so special.

Like my children who last night lying on my bed relaxed fro the 1st time in weeks with Will in the house how lucky I am, how lucky to have a great job, great future, great friends, great kids and a body which has fended off everything that has been thrown at it this summer. I want the tube gone but know I need to get everything right before I take the step of having it taken back out. It is a pain but also has been a life saver for me and Thursday this week will be D Day for the tube!

I wish I could sleep more during the night but realise 33 sessions of RT plus the neck operation have asked some pretty serious questions of that it will soon all fall into place as long as I relax, chill and smile :)


Friday, September 02, 2005

Day 15 - Medical update

Well unsprisingly I turned up at 1000 am for my post radiotherapy review only to find the person who was due to see me on holiday. No big deal but my dear friend had volunteered to take me and she had taken time off work so the clock was ticking.

Eventually Dr Sheriff saved the day just like those in all the Westerns I had been watching and saw me at the last minute. Well the bottomline is everything is going well, people say I am looking good, better each day and sounding better. It is not easy at the moment as I convinced I am fighting a chest infection not made easy by a nasal tube and a runny nose from that area.

I have been able to juice up melon juice now and eating ice cream and custard at the moment which is another good sign and my voice is coming back to its old self, even with a slight slur, but hey just like the old days. The tube I a bind but important for getting the feed and vitamins into me that the food cannot at the moment. The whole eating thing is very frightening but slowly eating soft food will get back into the swing and taking those 2500 calories a day that I need. The good news is I have been told I hope to have the tube out next week a milestone I cannot wait for :)

Thursday, September 01, 2005

What is a co-parent

Ok a co-parent is a parent who plays an active part in your children's welfare, upbringing and life without playing the partner role to the mother of your children.

In essence I have joint responsibility to my children and play a very active part in their well being without living in the same house as their mum. Whilst many fathers are active, my involvement is not just around set times but playing a full role in decision making for their future.

Hope this helps.

Day 14 after treatment

I decided to be positive and change my counter away from the negative count up of days found having cancer to days after radiotherapy finished. It seems more logical now I am recovering and moving forward with my health.

Today is my 1st RT out patient appointment at the hospital I am not sure how intensive this will be but would of though just be a check up of things and how thing are getting on. I think it is too early to hear "cancer gone" but lets hope I hear words such as treatment went well and your doing very well, I need praise at the moment if only to keep me going. Side effects can last anything between 3 - 6 weeks after treatment so need to get use to feeling as I do for a few more weeks. Boy its hard but must keep smiling and attacking! Talk to you later after my appointment.

Nigel x

Wednesday, August 31, 2005

Day 93 - Emotional wreck

The enforced stay of being at home is not good for me. Whilst I was able and now fit enough to drive into Exeter yesterday to buy a new addition to my blow up range! oh err Mrs! Matron pray explain, 9 foot of tender boat you fool a certain amount of time does get used in front the TV in particular when topping up with liquid food. Yesterday afternoon I had the choice of Khartoum, Tale of Two Cities and a programme about a bunch of USA makeover artists extremists knock down your house and rebuild it within 7 days.

I decided to watch all three through a process of channel hopping and timing commercial breaks. At the end of all three I found myself sobbing, sobbing for the family who have had their house rebuilt because they are real good eggs and help someone child with bone marrow donation, sobbing because Dirk Bogarde going to an innocent death and as for the last film who needed a cause? The whole thing brought the fact home that I am getting better and quite frankly the morphine reducing and allowing me my life back again. Yipee

I forgot to tell you that the only time I have "medical issues" is now waking up hour. I think half my problem is a chesty cough at the the mo judging by the rubbish I cough up in the morning. Although pain reduces when stable and not coughing, I am not sure certain things are healing, though not coughing now should be an achievement. Inside my throat its is still very sore, although taste has has come back. I am not sure when I will be able to find a nice bland solid, but might try baby food at the end of the week to give it a try as I'm fed up with nasal tubes and to be honest they will want it out soon judging by my last convesation!

Spring water goes done very well as does milk, so at least I will live but one of the funny things is I have lost the sense and ability to regulate what I drink, using a straw as I gulp its hard to stop and with taste coming back water is even more tastier. I would imagine anything fizzy would result in bubbles coming through your nose :)

Yes everyday does make me better, its a long recovery, too long for me but sitting it out has it strengths but a whole sackful of downs better dash for my daily dose of district nurse intervention.

Speak soon Nigel x

Sunday, August 28, 2005

Day 92 - Recovering is not easy

I was warned that recovery can be a bad as the real thing, as the treatment is still working(she meant killing things) 7-10 days after. The RT nurses know their stuff and my mouth and throat has given me problems all weekend.

I saw the children yesterday and had a great time. When the kids left I went straight to bed, although tired decided to carry on sleeping when I woke up about 9pm. It was clear that I had a tickley cough, I have these before and you can imagine the havoc it causes a cough, sore mouth, neck, tounge and throat the last thing you wanted to do was to try and chuck up all night. I did the chesty cough, the one where there is nothing to come up but just rips your insides out. The first session at 2200 the next at 0430. You could imagine how emotionally weak this had left me, any act of putting liquids and fludis into my body becoming hard and painful.

I see each day as a piece in the recover jigsaw, all is fundamental to the last piece of full recover but I know it will be a few weeks before I "lose the tube" as my swallowing will need less nights than last night than more I am off to dream off.

Night all: x

PS:New fish 14 , Pain 4 out of 10! unless I cough then 8!

Thursday, August 25, 2005

Day 91 - What use is a life jacket

My children are back from "Up North" and I have just been asked the question what use is a "life jacket 20k feet above sea level in a plane hurtling hundreds of MPH towards the ground as there is no sea between Exeter and Bradford" I said non what so ever so my son moved onto to his next question, what use are oxygen masks, ,,,blah blah.... you know the score.

Yes they are back and boy I have missed them big time, missed then not only in the 2 weeks they have been away but in the months I have been ill. I love them so dearly I have pacing around tonight just waiting for the plane to land down back in Devon and my children to be home.

I have been progressing well pain levels about 6/7s rather than 7/8s. First thing in the mornings have been tough with sore throat and mouth a wash with the tar like squirmy phlegm which makes me sound like a washed up 60's porno rock star who has one giggie too much the night before. Once the piankillers are in you loosen up and start the day with fending off a shed load of questions from the district Nurse.

One thing the NHS seriously needs to sort out is the consumption of garlic by its employees it seems the sweet district nurses are worse for shovelling in the stuff behind managers backs. With chemo you notice smell and food smells can make you vomit meters off, if fact the past 3/4 weeks virtually every doctor, nurse of member of catering staff with the exception of Yeo wards answer to Mrs Doyle "Maureen" reeks of the stuff.

There you are being injected by nurses saying mmm yes avoid this and that when it is their breath actually wanting to make you you puke, now not even the brave "Nigel" has thought of a way of tackling this one any suggestions!

Wednesday, August 24, 2005

Day 80 something - Home day 2

Pain levels : tongue, throat and mouth 7-10, a faller from yesterday's 8-10 unless coughing ten back to 9-10.

As I inspect the ferry house after my ordeal and few weeks away I note very little has changed except words. On of the longest set of statements and words are all around treatment. Terms like "treatment over, finished and completed" are used. This is because there are not tangible you cannot yet actually derive a benefit from a treatment such as you can when you have a painful tooth removed.

I have always said cancer treatments "radiotherapy and Chemo" are oxymorons and they may you feel worse before you are expected to get better.

Its now 7 days since my last full dose of radiotherapy I was too zonked to hold a party, to sicky to scream hurrah! and planin sensible not to kiss dirty unhallowed hospital floor, after all I know what goes on in there. My last 10 days stuck in hospital showed how lucky I was, my moving around the ward to make allowances for fellow patients who were dying was obvious, in fact I was told! The pain in voices of those who had been told earlier that there was no cure and that all they could do was to delay to inevitable. I am not going into fill detail here as I was too unwell to document anything down, but I felt this was my personal space, alone with my thoughts and others away from me.

The pain continues see my scientific laser display earlier up the screen. It is all in my throat but not long before drinks and food start making their way back down that hill.

Anyway need to go back and study my charts, as the wind is up and there is no sail today x N

Tuesday, August 23, 2005


battypatty says; Nigel is home now and being well looked after by his friend Orpah. He will have nurses coming in daily and the aim now is to build him back up. He is very tired and will spend a lot of time sleeping so if he does not update here for while that will be the reason. Thank you all for your messages of support and kind wishes. Now - Keep attacking, Nigel!!!!! xxx Pat.

Saturday, August 20, 2005

Saturday 20th August

Ron wrote.
I saw Nigel today. He had asked me yesterday, if the Staff agreed, to take him home for a visit today. After checking that it was ok we drove to his home in Starcross taking a diversion to avoid the holiday traffic via Powderham. Saw the Deer in the Castle parklands but Nigel was not too aware of them. I dropped him, made sure he was alright and then went off to do some shopping watched a bit of the rugby and picked him up again at 5. He is a lot better than yesterday, still having trouble with his throat, but able to speak a little, still nodding off at times though. A fighter!!
He told me he hopes to be leaving the hospital on Monday afternoon, and this time he will get backing from the local hospicare nurses a daily visit to make sure he is able to cope with the pain etc.
I have the utmost respect for the medical team at the RD&E, which has been superb at all times but I do feel that there has not been the same support available for Nigel when he has been at home. If there had been then I am sure he would not have got into the state he found himself in last week. That is not the fault of the local hospicare, they would have helped I am sure if asked.

a day of 2 halves

battypatty says; had a text from Nigel in the morning to say he had never felt so ill and the pain was really bad. Went in to see him at lunch time and he looked so frail and fragile it was heart breaking. Holding his hand was like holding a child's hand it was so small and thin. BUT.........tea time we had another text from Nigel saying that the staff had said he was allowed to go home in the daytime and could we help? Ron has to go into Exeter to watch rugby trials so he agreed to pick him up, drop him at home and then fetch him on his way back ONLY if the staff are 100% behind him going home. If they are in any doubt then he stays in the hospital. I did have a chat with a doctor but not the one treating him. She said that they had decided to stop the last chemo session because of the bad reaction he had to the last one. It was now a question of just slowly building him up and then another case conference in about 6 weeks. Perhaps Nigel will add to the blog later, we shall see!!!! Pat.

message for "Big Ron" - his nephew Mark went in to see him yesterday - LOL.

Thursday, August 18, 2005

just a quickie!

battypatty says; We have not been in to see Nigel to-day but I just spoke to Kevin who says he is a lot brighter to-day than he has been for a while. We will be in there t0-morrow so will give more details then. Thank you for your e-mails & e-jokes, keep them coming! Pat.

mail for Nigel c/o -

Wednesday, August 17, 2005

the end of the line?

battypatty says; I didn't get in to see Nigel as I had a bad night and I was just not up to it but Ron went in to TAKE HIM HIS PHONE ( hee hee ) and clean clothes etc. He had his last session of radio therapy to-day and there seems to be a feeling in the air that they may not now give him a last chemo session. He has accepted that he is ill and just needs to stay there and be "nursed", something which they are doing admirably. The NHS takes some knocking, and quite rightly sometimes, but Nigel can have no complaints about the way he has been treated. I know he has moaned because they have not jumped as fast at times as he would like but in a rational frame of mind he would agree with me. Ron says he is looking a lot better than a couple of days ago and is more alert. TY for your messages & jokes, he was very pleased with them. A belly laugh was not achieved but a smile is a wonderful thing to see. There is going to be a conflab to-morrow as to how they proceed and , of course, I will let you know. Pat.

my e-mail for messages to Nigel -

Tuesday, August 16, 2005

chemo postponed

battypatty says; Nigel rung earlier and said that they have cancelled his last chemo session as his health is just not up to it. He has a very low red blood cell count and they think he has a chest infection. They are going to get him fighting fit once more and then give him the chemo. He wants us to go in to-morrow ( not allowed to-day! - lol) but we are not going to be allowed to stay long and anyone who is not 100% well - STAY AWAY! mY E-MAIL address if you want to mail Nigel is , again, Please send messages as I know he would really appreciate them - even if they are only a page of rude jokes! After all, do any of Nigel's friends know clean ones? Speaking to his friend Kevin, the oncology nurse, and he says that Nigel has seen the error of his ways and promises to stay there until they , THE EXPERTS, feel he should go home. Fingers crossed he keeps to it. At the moment he is just too ill to move. Ron has got him a new battery charger so Nigel & his phone will be re-united to-morrow. Pat.

Monday, August 15, 2005

not feeling too good

battypatty says; Nigel is not at all well at the moment. He is unable to speak much as his throat is so sore and we employed a kind of sign language and grunts. He is also receiving a high pain meds dosage and is not quite with us. We took in some clean clothes and picked up his dirty laundry ( he is still getting the women in his family to do his laundry! ), went and fetched a few things he wanted and left, He really was not up to visiting. Still, one bright light on the horizon - he now has a phone! It is just a bog standard thing, not like his all-singing, all-dancing thing but hey, beggars can't be choosers. It really broke me up to-day to see him like he is, we went up to get a coffee and I had a bit of a weep, wiped the tears away and went back smiling. So you see Nigel, I am not as hard as I like to make out. If anyone leaves a comment I copy them off and take them in to him and if anyone would like to send him an e-mail then send it to me at and I will make sure he gets it. I am sure he would love to hear from you. Pat.

Sunday, August 14, 2005

Panic stations!!!!

battypatty says ; For anyone who knows Nigel well they will know just what this means! He rang to say that his mobile phone battery had run out and his battery charger was not re-charging it. NIGEL HAS NO PHONE!!!!!!. I promised to take mine in for him to-morrow and he can swap the sim card but hey guys, just imagine - Nigel with out a phone .ROFLMAO. For those of you who do not know my brother that well I should explain that when he was born they did not cut the umbilical cord - they cut the phone wire. I once asked him what he would do if they banned mobile phones and he said he would have to start talking to people. So, if you have not heard from Nigel, this is why.

just drifting..............

battypatty says; We rang the ward before going in to see Nigel as we were not sure he would be up to visitors and they said that he was on a pain control level that was allowing him to just drift in and out of sleep and they would prefer he stay that way. Apart from that - as well as can be expected. We will check with them again to-morrow and let you know. At least he is comfortable now.

Saturday, August 13, 2005

giving in gracefully

The picture are the radiation beams.

battypatty says; Yesterday, when Nigel went on the ward for his check after RT, he was told that in their opinion he should stay in but Nigel, being Nigel, refused. He argued that they were having him on Monday for as long as it took and until then he would rather be in his own home. A sentiment I am sure we can all relate to. Not having heard from him at all, by phone or pc, we texted him this morning and said he must let us know he was ok. He was not and after ringing the hospital Nigel is now on his way to the ward where he will stay until they decide his treatment is finished. He has a large ulcer on the side of his mouth, constant reflux action and his pain control is not good. Once settled, hopefully he can just gather his strength for the final push next week. I know your thoughts and prayers are with him and I will keep you updated. Pat.

Friday, August 12, 2005

Day 81/82 - Keeping up appearances, again!

For those of us who have children the keeping up of ones self appearance can be hard, kerb stops to quell the near rebellion sounding "I need a wee" or the "daddy I am going to be sick "when now" but when you asked the question you knew your darling siblings cheeks were more to do with the vomit they have stored up rather that wind, as they let rip over their grandparents new leather sofa that grandfather was still polishing had just taken the wrappers off. Yesterday was a day very similar to that in my own life.

The children were safely dispatched via Flybe to Leeds/Bradford Airport from Exeter in a record 45 minutes against the usual 45 days by "Virgin on the ridiculous rail" I understand that William was the 1st to keep up appearances but shouting on landing "looks like we are all going to crash at his highest volume level" Good boy! as his sister went round selling look cute in pink death policies only 1 installment necessary.

I took the bus from their village, to mine, a 3 mile single trip in which stagecoach operates every 15 minutes. I managed to be sick on the bus, thank heavens for Tescos carrier bags and immediately stepping off the bus. Now the insertion of a large tube showing people that thing are not 100% in the food department is a give away however there is still personal embarrassment from an event happening in the 1st time. The sickness is foul, not only do we get the "feed" bag stuff reappear but the pain from my swollen neck and throat just adds to the fire.

I had the chance to stop my last chemo session next week and stop my RT to recover. But with more three more RT sessions after today and one more chemo next week I am looking forward to kissing the arse of cancer good bye as I drive off into the sunset on Wednesday.

I could have given up and said no more lets see how we got on, or come back in 2 weeks but I had set a plan in my life to complete the job on time no matter how painful, and boy next Wednesday at about 1230 when I walk out the RT room I hope it will be over x

I am keeping attacking! N

Wednesday, August 10, 2005

Day 80 - A touch of the spiritual unexpected

It was 2330 hours when I was able to slip down into my huge pillows and new bed linen on my 2nd night at home from hospital. The gentle purr of the food pump by my beside and my hand wandered to the huge emptiness of my king size bed with the anticipation that I will not forever have to endure the delicate moments of falling asleep and waking up alone in my bed.

As the Church clock struck the 1/4 to midnight chime I felt my head be raised and a warm glow in a halo effect come around my head and neck area. When I lifted my head I opened my eyes to see what was happening, it was like I was putting my face into a warm bowel of water and the pain, discomfort and difgurement had all gone from my tired body. It was relief raising my head and feeling a warm "ready brek" glow.

I knew something was not all that it seemed and within a minute the feeling and sensation had gone. I turned over only to have a sensation of falling 5 meters onto a hard surface landing in a heap and yes it did hurt. I had not gone anywhere but still in the bed in the position I had been in all along.

My mobile phone followed me in a fall as I heard it thud against the floor. Before you ask it did happen just a few minutes ago and I was determined to capture a written record before that was consigned to my mind.

It was not the medicine as none I take give hallucinations, perhaps its was something more powerful, any ideas?


Tuesday, August 09, 2005

Day 79 - Getting back to reality

I arrived back late last night. My hand was forced to leave hospital yesterday when I went for a mid afternoon snooze only to see the man with the “telescopic hair spray” sitting in bed opposite me. You can imagine my fright, was he going to reach for his soap bag, or was he in fact the grim reaper and a spray of his magic hair spray whips you away down under!

The feeding process went well last night apart from the frightening prospect of the tubes from my feeding machine and syringe driver trapped around my neck. Something I need to be careful off, after all come all this way just to strangle myself in the process!

My dreams are very vivid at the moment. There were two different dreams yesterday, which without the chance of having a pen around I have struggled to remember, however they all include an element of “letting off steam” and using my cancer as a positive to get things done. Both dreams were about expressing myself and how I truly feel about having cancer. I remember both dreams had me in public perspective and both involved me speaking or campaigning for causes I can recall the people that were there and those around me were those I felt comfortable with.

With the cancer treatment coming to an end it is clear that my mind is body and acutely aware that the end is nigh. There will be after treatment pain. But then it will be all about recovery. I am not quite sure what to expect after this massive medical, physical and emotional support the mechanism will withdraw and lead my life back to slow normality whatever that will be.

Well I have been up since 9am, all fed for the day, just waiting for my lift to the Hospital and things are good, just 7 more sessions to go!

Sunday, August 07, 2005

A day of rest

battypatty says; Went in to see Nigel in hospital to-day but we did not stay long as he was very tired and not really in the mood for entertaining. So, it was a brief chat, inspect all his equipment, read his cards and leave. As I say he is feeling very tired but apart from that a lot better in himself. He is nicely cocooned in there, all food & meds are going in his tube and he is a lot more comfortable. He is starting to crank up the political machine again - lol. He may come out to-morrow but is taking each day as it comes.

Friday, August 05, 2005

Day 76 - Keeping up appearances, Thursday 4th.

Nigel has written this and I shall endeavour to read it! ( at least we know the spelling will be better - hee hee );

One of the first things that go when you are in hospital is keeping up one's personal appearance. This is mainly because you feel that you do not wish to compete with the nursing staff who hold the key to the enema cupboard but after a leg amputation it is always difficult to focus your mind on putting on your best lippie and setting your hair in rollers. However, keeping up appearances is so important in this modern world, after all what's a leg between friends, well depending where you live in the world it could be a roast dinner.
One thing about hospital that is much like prison is that you cannot chose your cell mates.If we are all honest we would rather be stuck in a cell with clingy "Craig" from Big Brother rather than a rampant Mike Tyson lookalike who likes to be called Daddy. I have three bedroom sharing colleagues all with various types of cancer and all at different stages. None have symptons that would scare children but certainly 2 of them warrant the attentions of this column. I have not changed the names to protect the guilty so will deal with these 2 characters in turn. Opposite me is Mr. Smith, mid to late 70's - spotless slippers(?) , silk dressing gown and the looks of Roger Moore. The one thing that did strike me was he had this amazing head of perfectly coiffured jet black hair and shiny white teeth. In my observations of him over the past few days he is the sort of bloke my mother warned me about. Rather than Roger Moore he reminds me of the childcatcher in Chitty Chitty Bang Bang. He has no ? belongings except his soap bag. This morning I managed to get a tablet stuck in my throat. The effect of this being that my mouth foamed and I looked like a rabid dog. The giveaway was the cages (?) and the nursing staff dressed up like 5th century Chinese warriors and prodding me with an electric cattle prod. ( Okay Nigel, just what drugs are you on? lol ) Whilst I was frothing at the mouth I saw the childcatcher fetch from his only possesssion, his soapbag, a huge aerosol can which because of its size I can only imagine he obtained from an Australian crop spraying Uncle. It was huge, in fact I am sure it was telescopic, the aerosol just kept on coming! It was industrial, huge and at one stage I was convinced it was inflatable! For the next 2 minutes terror reigned on the ward - Childcatcher was spraying his hair.I could see leaves being ripped off the bush outside, I could hear the gas attack sirens going off at Devonport Dockyard and his fellow room mates were flattened to the boards by this toxic hairspray. "Roger" continued to spray his raven mane whilst the rest of us were looking for the escape hatch and calls were made to Scotland Yard about chemical weapons attack. I am convinced that George Bush would have invaded! Then, with the speed of a minicab running late, he managed to return it to the small soap bag!!! I maintained a watch on him for other self grooming products (?) from the soap bag but alas, my entertainment for the day was focused on cricket.
Thursday was a good day in terms of health. I must admit Monday, Tuesday & Wednesday this week were energy sapping, emotionally draining days. I was at my weakest and was finally glad I said "Please help me".
Swallowing is now virtually impossible as everything including liquid food, medicine and water now goes through the nasal tube. The nasal tube will be replaced next week by a PTB (?) tube. It is a tube which is inserted directly into your stomach. Whilst the nasal tube is not painful whilst it is in ( inserting it was a real screamer!) it is very cumbersome and unwieldy to use but it is effective and has for the past 3 days kept me alive. The PTB is unobtrusive and non-visual and it will be in for the one week remaing of treatment plus the few weeks after whilst my throat and mouth recover. When I had my nasal tube fitted at the second go I was scoped to check on the state of my throat. The exact words used were " You poor thing, I can see why you are in so much pain". My throat is in shreds, ripped apart because of the radiotherapy and ripped further apart by the repeated sickness.
I have none of the anxiousness(?) I had before about Yeo Ward. They had made me better this week and for that I am grateful however much the inconvenience of staying in hospital.

P.S. - Lizzie has passed her MOT and for £200 - what a bargain!

Thursday, August 04, 2005

just a brief line

battypatty says; We have not been in to see Nigel to-day but he says he is ok and he is getting "food" in him and you will all be pleased to know "bodily functions" have been restored! :-). Paul ( his nephew ) went in to see him to-day but he was asleep and he said he just did not have the heart to give his tubes a yank because he looked so peaceful. Fingers crossed for going home to-morrow. He said, in a text, that he has it all written down so wait for the blow by blow account!!!!!!! Pat.

Wednesday, August 03, 2005

don't speak too soon!!!!

battypatty says; they have succeeded in putting the nasal feeding tube in to-day and he has started having his first "meal" in quite a few days. The bag takes 24hrs to go through and then they are going to show him how to do the next one so he should be going home on Friday. His friend Kevin, the oncology nurse, is going home with him and staying for the weekend so he will be well looked after. I didn't manage to get in there to-day but Ron went in as Nigel wanted more things fetching from home. He says that he is looking about 500% better ( men do love to exaggerate!) and there is a spark back in his eyes that had gone missing in the last few days. Despite this, he is , of course, not feeling at all well and is raising no fuss about how soon he can go home. Pat.

Tuesday, August 02, 2005

the best laid plans of mice and men etc........

battypatty says; Went in to see Nigel this afternoon but he was not really up to visitors so we bought him a couple of papers and left. He was very lethargic and I believe he is on analgesia. He had not, at that point, had the nasal tube fitted but they were getting ready to do it. I had a text a couple of hours later to say they had failed in their efforts to put it in and the whole procedure was a nightmare. I am guessing here but I would imagine it has got to the point where his throat is too swollen to allow access for the tube and I fear this may now mean he will have to have a stomach tube fitted. I know this , more than anything, is the thing he really fought against but he must get nourishment in him. I just wanted to give him a big hug and take his pain to myself. Will update as and when, Pat.

Monday, August 01, 2005

Sanity has prevailed!

battypatty says; Nigel has been admitted to Yeo Ward to have a nasal tube fitted so hopefully he will now start getting the sustenance he so badly needs. He is very de-hydrated and expects to remain in there for about 3 days. I hope to get in to see him to-morrow and will update you. Thank you all for caring, xxxxxx Pat.

Sunday, July 31, 2005

Day 71/Day 72 - Whitbread bitter

When I was at primary school to get to the shop in the morning we use to cut through the pub car park. I always remember we use to press the top of Whitbread Bitter kegs and get our fingers covered in bitter. We must of stank of beer when we went to School. I was easily led :)

The last 2 days have reminded me of the fizz and froth the beer use to through up our arms, no real ale then. My body has been forcing this white pasty froth into my mouth, and swallowing eases it for a short while before, then reappears ripping my throat open with bile and scar tissue in a sickness I would not wish on anyone.

This weekend I can honestly say has been the worse in my life, most of it in bed, all of it in pain, the only joy seeing my two beautiful children who without them I would of given up this fight weeks ago.

There is nothing witty, sexy, funny, obtuse, eccentric I can think of tonight, apart from I will talking to those close to me about tube feeding, my body is week without food, a throat which is closing and sore and ripped apart, will not last 2 weeks without serious damage and the short term loss of having a nasal tube will have long term gains.

Food and fluid will then be taken care of alllowing me to use all of my energy to fight the weeks ahead.

The ferryman x

Friday, July 29, 2005

Day 70 - 13 days to go

Its late on Friday night and three weeks ago I started the worst night of my life. I have taken to having late afternoon sleeps waking mid evening. Friday was my eating day, I think at the moment we are up to one Weetabix, One Doughnut, One piece of chocolate and three spoonfuls of Frosties. Now that is 100% improvement on yesterday so tomorrow may get onto 2 Weetabix.

There are many things I detest about this treatment but the one I really dislike the most is opening the fridge or a cupboard and wretching. The smell of foods become over powering and although you feel like eating food, you know the minute it is cooked or opened you cannot eat it. You have no taste, or the metallic within your mouth takes over. Tonight was hard, I got up wanted something to eat but the mental thought of 3 weeks ago made me scared, even walking into the kitchen made me shake. My body trembled and I could feel my heartbeat rise, I opened a cupboard door and had to slam it shut and sit down. It is clear I need my cycling face masks I wear in London, I have one some where but wearing one in Starcross may be construed as some act of terrorism or S&M! My normal outlets like lucozades are out at the moment due to the acidic nature of most of the drinks which sting my throat.

It is all small steps at the moment, but I am not quite sure what I am going to do with my £15 off Tescos home shopping voucher before August 7th! Perhaps I could stockpile goodies until the 1st week in September, but then I suspect I would be paranoid about eating unhealthy and throw it all away.

I had a doctors appointment today, one to obtain more painkillers the other reason to sort out some paperwork. I always get emotional when seeing my Doctor, I think its a manthing, I know him personally and we have had many chats about running children and life. Simon Rains has the ability to show empathy but make sensible judgements. I wandered off again on a Friday night to the village Chemist and managed to lose my perscription enroute, re-tracing the route I found it in the post office as I had dropped it on the 200 metres journey and headed back to the pharmacy. I felt like crying, I felt worthless and useless and pretty much wanting to give up life again. These things may seem irrational to those readers who have not lived through cancer or experienced it little things get you down. Keeping your fragile existance going on a day to day basis, is it very difficult.

I need to be rational about myself, I have made huge strides over the last 5 months and through three major operations, 4 weeks of "oxymoron" treatments dropping a perscription can be so hard. When feeling down tonight I had an email from a very good friend of mine who has unfortunatley the experience of cancer:

Now here the for god sake bit:- you know youve been told you have cancer, you have a major operation, radio therapy, chemotherapy its still going on now, anything in your body good or bad has completely been killed, you spend alot of time feeling sick being sick, in pain morning noon and nite, you cant even look after your kids for long because you tired, cause you cant eat for the energy, you cant really go out because you dont have the energy and you are at risk of other peoples germs. of course you feel bloody useless, and downright shit on. probably even asking what on earth have you done wrong to warrant such a punishment. so no wonder your feeling down, thats what you feeling, depressed, and of course you will. I would recommend a little bit of cannibas, because you feel your letting everyone down. But the truth is your not, and soon your be bouncing back and we wont be able to keep up with you.

Roll on 13 days of "treatment" to go!

Thursday, July 28, 2005

Day 69 - Full of good advice

Ok I do not really want to die, but the treatment makes you feel that you want to die. I have been reading Bob Champion book the Grand National winning jockey and in his book he was convinced they were trying to kill him with chemotherapy. I am sure chemotherapy and radiotherapy are oxymorons, where is the therapy?

I awoke yesterday I was so weak I could hardly, I had two great pieces of advise the day before one from Jan take your painkillers not when you need them but when you are told to take them and from Miss Powderham 2001(still retired unless she can win), Orpah telling me to use everyone on your help list over the next few days and boy I need all the help I can get. It was clear that my muscle tone has gone, I look like an old man, I know that will come back once I start exercising, I have lost over 2 stones, I had not eaten in three days and felt very sick. The hearing is my left ear is going, a temporary side effect I was warned about, lets hope its temporary. There was a point on Wednesday when I did question going through the last stage of the chemotherapy but as it just one more session to go I will be brave dig in and get it completed and sit back and smile its all over.

I went to the hospital yesterday for my RT and nearly collasped with low blood sugar, I was sat in the RT section and my eyes welled up with fuzz and bits of furry flying around inside my eyelids. It was clear that I had low blood sugar, I nearly collasped, I was in need of sugar help came in the way of the WRVS coffee bar, hot water and 6 sugars in each cup of hot water. This made me feel better but gave me a warning lucozade and dextrose. I had made the decision not to eat until Friday, this was as a result of the last chemo session. I was in danger of not getting away with it and fairly scary. I got very stroppy with the RT who did not seem to understand the process of chemo and insisting I saw the dietician, she was the last person I needed to see it was a straight forward low blood sugar level, it takes me three days to start eating after chemo, so get real I said to them. In fact I think I told them I was happy doing what I am doing, but did not say "after all its you who is trying to kill me" It seemed they did not understand me. Understand that I had developed a coping strategy to deal with this and with just 14 days of RT rays left I was not prepared to change the strategy just yet.

I saw Dr Sherriff who is a lovely caring Doctor, early 30s but amazing manner. We had a long discussion, estasblished my mouth was full of thrush, my weight was fine, lowest I have been since the mid 90s as all my muscle tone has gone, and agreed as long as I was drinking during and chemo he understood the reason why I could not eat. I left in better health than I arrived!

I forgot to tell you about more good advice, that included a nurse during chemo saying "you must get out more" of course love, the first three days after chemo you feel like death, the weekend you are recovering from radiotherapy, then the after chemo your white blood cells are at their lowest and you are advised to avoid everyone and anyone just in case you catch the "black death" at least it sounds quicker that murder by chemo. I did think about returning one of my one liners but as she was injecting something nasty into me, thought twice about being witty.

My sister had the best advice of yesterday champers! Her friend advised that her husband swigged champers after chemo to stop being sick, sounds good to me so get some small bottles of course to give me the taste back :) I love champers!

Things are looking up tonight and life feels better. I do feel feeble but I am not giving up on this, not far to go, not long to go before I get my life back.

As Bob Champion said "The worst should be over. I'm counting the days to the end of the treatment. They've done their best to kill me but they won't succeed now. I almost there"

Keep attacking !

Wednesday, July 27, 2005

Day 68 - I want to die

I know that is a horrid title but it is the way I feel.

I woke up about 8am in pain in my mouth and throat. I have to use salty water mouth washes now becuase the oral ons I have been using burn my mouth and throat just like someone has put a flame to the roof of my mouth. When I mouth washed this morning a huge flap of the top of my mouth came off.

My mouth was very dry as I could not breath through my nose and my mouth, however sore had become the only source of air. I had a glimpse of the sickenss this morning but got all the painkillers I could inside me and went back to bed.

I do not care what anyone says but there is no way you can eat after cisplatin, teh smell of the open fridge made me wretch, and of course wretching with your thraot and mouth as it is can be described as hell.

I stayed in bed until Ron came to take me to RT, I got up at 1pm and had a strawberry build up drink which I knew would reappear.

It did the minute Ron dropped me off I opened the front door smelt the kitchen and threw up all over the front drive, in front of my neighbour and the street. I just could not get in the front door without being ill.

Well I knew it would be like this but at least that the 1st session afew more to come and yes milk drinks are definately out. Why is it your feel better after being sick? However, I know its short lived and I await the next session with dread.

Tuesday, July 26, 2005

Day 67 - Hospital ramblings and home

Its 0115 and still no drugs, Captain Mitchell tells me that the “Chemo” is not in the chiller but still in the “make up” room so kick off is delayed until 0200 hours. Midnight and 0200 is much the same unless you’re a ghost or have a plane to catch and after all as UK licensing laws have changed so that we can get a bloody drink when we want to will ghosts have to change their hours of haunting?

I must be a 6th former as I have been given permission to administer my own drugs which include a cocktail of painkillers and two different laxatives which to be honest is more information than you need but they seem to be all wind and no action! You have of course to sign a form to say you take full responsibility to administer your own drugs, but after all it is the same ones as I have been taking at home for weeks and then ones that I have been trying to find the most effective pain relief.

At 0200 am, Admiral Mitchell arrived spot on, he exact quote “could not be late with you on the ward” He tried to funny quoting that he had put the liquids in the fridge and it would hurt as ice cold liquid hits my body I said I bring it on as I hugged my sheep. The sheep the padded warming furry creature had been shaved and it her summer coat.

I had the last laughed Major Mitchell had forget to turn the sheep on so for the first hour I sat their thinking this bags cold!

The rest of the day went off without incident, apart from I had a Delia moment when the 1st bag of chemo finished at 1200 midday and at 1235 despite my GIMP beeping nobody came to change the bag. I reminded the staff that “I not a celebrity, but more reason to get me out of here”

Chemo finished at 2.30pm and a row have ensued between the ward and the radiotherapy (RT) department, which meant that the gap hour between chemo finishing and RT should be 4 hours. I understand the RT section has complained over the time it has taken to finish the chemo! I think it is more to do with going home early than the burning desire to get me under the microwaves!

At least the is horse racing on the telly. I thinking if I am honest I only enjoy Horse racing for the betting and instant cash and the generous amounts of beer and champagne and beer you can drink. Its Glorious Goodwood, 5 days of watching identical snorting horsy beasts mincing around a paddock, each with a tiny emaciated Irishman on its back, and then melee hurtling along in a cloud of clods while a very posh commentator pretends he can tell you which one you have staked your wife on with a man standing on a box wearing a dodgy car coat with a brummie accent.

Of course at Good there will be ladies day, where call centre girls from Southampton dress in flimsy dresses as the British weather unleashes a force 8 gale on the Sussex Downs and upsets the outside drinking games. One thing they can see is hours of more identical snorting beasts mincing, whilst the prance around the paddock wearing a fruit and veg stall on their head, whilst being followed by a pompous and posh commentator accompanied by a fashion expert who looks like he should be working on the fruit and veg stall!

The trouble is that horses weigh a few tonnes, have huge heads, asses as big as their owners with nasty big teeth and big hoofs, actually like their owners that get bigger when standing up and attempting to decapitate the fruit and veg stall off the “call centre” heads and throwing the tiny Irishman off like Tom Thumb. Cut to the trainer who tells Claire “A bit of big lass who happens to live with a woman” that he’s a “real baby and friendly horse at home” what does he mean he curls up with the sofa with the family or if he ever breaks a leg he will be easier to shoot than innocent man wearing a large overcoat without a tube ticket.

As the paramedics rush into the paddock to attend to the decapitated lass and the Irishman remounts and bags his fee. Now with respect, huge ass and legs, 3 tonnes in weight, awesome head with big nashers, and the chance to kill does not sound like the place to be for me, but does sound like woman I went out in my teenage years. The horse racing got worse, the odds on favourite got beaten in the big and the trainer should of said “Look all your boys who have just spent this weeks housekeeping on my horse, he was crap the jockey never understood a thing I said and should be auditioning for the Christmas Diddyman movie” Alas they don’t listen to these excuses.

• The horse does like a right-handed track! The track was 5 furlong flat course with no bends?
• He does not start well out the gates! He has run 21 times before why has it taken it until now to realise?
• He struggles on grass! Why bloody enter it, I give up!

I have managed to negotiate an early exit tonight from the hospital as the treatment has been speeded up so keep attacking I am off to pack my bag!

I got at home at 1100 and must admit my mouth and throat are awfuul, they feel cut up, I have lost the skin in my mouth and I can feel awful.

This is the worst I have ever felt in my life. I am off to bed now but the minute I walked in the door I picked up a cold, literally the minute

This does not help when you mouth is wrecked, your tounge is scarred and painful and everytime you open the fridge you want to wretch, your whole body gets wracked with pain.

Its going to be very hard this week please bear with me.